Birthday in Heaven

Birthdays have always been a huge celebration for Casey. Each year as we would celebrate one more year, it was a huge victory for all of us. We knew from the very beginning that we would eventually run out of earthly birthdays, and that every day (not just birthdays) was a gift. I think knowing this helped us to be that much more thankful and joyous with each celebration.

We got so close to 10, so close! We had already bought Casey an outfit for her party, made arrangements for her cake, started ordering decorations, and we were just working on final details for her Daddy-Daughter Sock Hop. We were all very excited about the big 1-0. Casey’s body had other plans though, so instead, this will be her first birthday in heaven. I’m sure she will celebrate just as big (or bigger) there as she ever did here.

There are family and friends across the globe that follow Casey’s story. We have been so humbled by all of the people that have reached out to tell us how they too were touched by our amazing little girl. I don’t think we will ever really know just how far her spirit spread. Sadly, many of these people were not able to join us for her beautiful memorial service.

We have come up with a way that everyone can participate in helping her celebrate her 10th birthday- or first birthday in heaven. We invite everyone to take photos or videos of themselves (alone or in a group) releasing pink and/or purple balloons. Casey always loved balloons, and all things pink and purple. We plan to have everyone release them together at 12PM CST on her birthday- Saturday, April 23rd.

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After you release the balloons, please post your photos or videos directly on Casey’s Facebook page, our event page, or you may email them to us at info@caseybarnes.org. We will collect all of these photos and videos and compile them into one video, add some of Casey’s favorite music and share the video here.

Please, help us wish our little angle a very special 10th birthday. Thank you, and thank you all for your continued to support.

Picking Up The Pieces

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I have had a lot of family and friends come by, call, email, text, etc to make sure I am “okay”. I don’t really know how to answer them. I am alive, and I am doing my best to move forward, but no, I am not okay. I don’t know that I ever will be.

Casey HATED when people would cry or get angry near her, so I know that she would be furious with me if I spent all day every day just crying and being angry at the world for taking my baby from me. I also want to make her proud of me. I want to continue the work she inspired within the special needs community and I want to keep her name and her memory alive by helping as many families like ours as I can. So for these reasons, I get up every morning (if I slept that night), I get dressed, and I do my best to move forward.

I have spent the past 10 years with 1 single motivating factor. Everything I did- I did for her. I know, I know, queue the Bryan Adams. It’s true though. If I was home I was managing her airway, protecting her skin, giving medications and food by her feeding tube, changing diapers, working on her schedule. When I was out I was usually picking up something she needed or working on setting up something special for her and her friends. There were a few occasions I would do something for myself, but even then it was still kind of for her. I had to keep my own health (physical and mental) in check in order to be able to care for her. Luckily we had an amazing team of nurses to help with all of this as well. Even with the nurses here though, the last 6-12 months often required the nurses and myself to tend to Casey’s needs.

For 10 years all I have known is caring for Casey. Being there, caring for her is all I wanted. I knew from the moment she was born that every moment with her was a gift. She was never supposed to go home at all- making it to almost 10 years is nothing short of a miracle.

I have talked about, and been slowly working on setting up a nonprofit in Casey’s name to carry on all of the projects she inspired over the years. A lot of people worry what will I do now. Well, part of what I do now is create a legacy for my baby girl that will make her proud.

Losing a child is not black and white. You don’t grieve for a few days and then snap out of it. There are little sounds I hear, things I see, sometimes I have no idea what sets off a sadness that overcomes me. My heart is broken and as I held her during her last hours on earth I could feel her spirit lifting away. As she lifted away, she took a very large part of my with her. That part will never be filled. I can function without it, and I can find happiness without it, I can live with a part of my soul missing. It will forever hurt, and I will always hope to see her when I open my eyes, enter a room, or drift off to sleep. I try to focus on our good memories and her sparkle. She really did light up every room she entered.

It’s going to take some time to find “me” again, but I will get there. After doing the same thing every day for 10 years, it’s hard to just change. I still head toward to the medicine cabinet at 5PM to draw up her medication. When I wake in the middle of the night I still listen to here for the sound of her breathing through the monitors. I still expect to hear a knock at the door when the nurses would typically arrive. All of these things will take time.

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I feel kind of like a reflection in a broken mirror. You can kind of tell it’s me, but there are parts missing. As time goes by some of the pieces will be able to be repaired, but not all of them.

Many people want to know when we are going on a vacation. I understand this question, we haven’t really done anything like that in 10 years. However, the thought of going on a vacation is not on our list of things to do right away. We are taking baby steps. We are getting out and around town now, and maybe later this summer we will do a day trip or 2. We’ll work our way up to a vacation.

For the first few days/week we could not eat or sleep at all. After Casey’s service we were able to bring her ashes home. This has helped me so much. Our house was not right without her here, but after bringing her home I was able to sleep and eat a little more. Some of Casey’s friends that have come by the house go directly to her urn and talk to her. I don’t know how they know to do this, but seeing this fills me with so much love.

We appreciate all of the meals, cards, and everyone checking in on us. We think we are doing pretty good on most days, and just ask that you bare with us. Say her name, share memories you have of her, send us pictures you of her, or tell us if you saw something that made you think of her. We miss her every second of every day. It’s okay to let us be sad though. We have to work through it and some days (or moments) are just going to be hard for us. We don’t have the answers any more than you do. Everyone grieves in their own ways and in their own time.

Luckily we had 10 years to kind of prepare, and during our last 2 hours snuggled together as a family we were able to say everything that needed to be said.

This entry was posted in Casey.

Memorial Service – For Those That Could Not Attend

For anyone that was not able to attend Casey’s service on Wednesday, we want to share a few videos and poems.

Tim and I selected some of Casey’s favorite songs and put them to a photo slide show with a collection of photos through the years.  We realize some of these songs may not be traditionally used with memorials, but these are songs that Casey loved. If you would rather just see the individual pictures, you may browse our Slideshow Album.  Or you can enjoy the video here:

Casey’s Girl Scout Troop sang her ‘Over the Rainbow’ and did an amazing job:

There was a poem we selected for the program, and one of Casey’s doctors read a beautiful poem during the service as well.

When All That’s Left is Love by Rabbi Allen S. Maller
Read by Casey’s Palliative Care doctor- Dr. Craig Hurwitz

You Meant so Much by Cassie Mitchell
Selected by Tim and Marty for Casey

This entry was posted in Casey.

When All That’s Left Is Love

by Rabbi Allen S. Maller

When I die
If you need to weep
Cry for someone
Walking the street beside you.
You can love me most by letting
Hands touch hands, and Souls touch souls.
You can love me most by
Sharing your Simchas (goodness) and
Multiplying your Mitzvot (acts of kindness).
You can love me most by
Letting me live in your eyes
And not on your mind.
And when you say Kaddish for me
Remember what our
Torah teaches,
Love doesn’t die People do.
So when all that’s left of me is love
Give me away.

You Meant So Much

by: Cassie Mitchell

You meant so much to all of us
You were special and that’s no lie
You brightened up the darkest day
And the cloudiest sky

Your smile alone warmed hearts
Your laugh was like music to hear
I would give absolutely anything
To have you well and standing near

Not a second passes
When you’re not on our minds
Your love we will never forget
The hurt will ease in time

Many tears I have seen and cried
They have all poured out like rain
I know that you are happy now
And no longer in any pain.

Fly High Angel

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Yesterday was a very emotional day. Our hearts were full seeing all of the love and support from Casey’s many friends and family. Yet, the reality that people were there to say goodbye to our beautiful girl left us feeling very empty. I have to admit, for most of the day I was in a fog. Maybe that was my minds way of sheltering me from dealing with the pain.

The service was exactly as we think Casey would have wanted it. It was filled with pink flowers, lots of daisies (her favorites), and butterflies. There were people of all ages sharing stories and memories of our princess. We played her favorite songs, and even a clip from ‘My Little Pony- Magical Mystery Cure’. I was really proud of Tim for talking about who Casey was and letting people that may not have had the opportunity to know her like we do see a little bit more of her sparkle. Casey’s Girl Scout troop sang a song for her- there wasn’t a dry eye in the place.

We have been humbled over the past week hearing and reading comments about some of the lives Casey touched. We always knew she touched a lot of people, but I don’t think we will ever really know just how far her spirit spread. She was such an amazing, brave and inspiring little girl. Everyone that heard of her, knew her, or just crossed her path fell in love with her.

We have enjoyed reading all of these messages from her guestbooks and card we have received. We really appreciate all of the people that came out yesterday to help us honor her life. Many of you that were not able to attend have sent your condolences, and you were with us in spirit. We know the next few weeks (or years) are going to be very challenging. With the help and support of all of you, and the wonderful memories we will always treasure, we will get through this.

This entry was posted in Casey.

Casey Got Her Wings

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It is with the most heavy heart that we share that our little princess Casey passed away earlier today. Her loss will be felt by so many people. She lived a very full life well beyond her nearly 10 years with us. She made friends everywhere she went. To know Casey was to love her. Her spunk, beauty, bravery and kind soul filled many hearts with love and joy. She is at peace and no longer struggling. The last year has been challenging but she never gave up. We could not be more proud to be her parents. Her light will always shine, and there will not be a moment that she is not in our hearts and on our minds. We appreciate all of the kind words, positive thoughts and prayers through out the last 10 years, especially in recent days.

We are still working on final plans and details. We expect someone to post them here in the next day or two.

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Positive Thoughts and Prayers Needed

Casey has been struggling with ongoing and worsening respiratory issues. The past few weeks have been very strenuous. We will update this site in the near future with more details. In the meantime, we appreciate any positive thoughts and prayers to help Casey through this.

This entry was posted in Casey.

Beyond The Diagnosis

Recently I was honored to be a guest writer for a friend’s blog- Journey with the Johnsons. She asked me to honestly share some of my thoughts, fears, and experiences as a mom with a complex chronic child. I was surprised at how well the article was received and decided to share a copy of it here as well. These are feelings I always carry with me, but very rarely ever share. Hopefully some other moms out there can get a little hope knowing that they are not alone in their fears. Please, be gentle, this is not an easy one for me to share.

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Casey, has MANY medical issues. Her condition is considered degenerative (getting worse over time). While her personality is bigger every day, her body is slowly (sometimes quickly) failing. Her list of diagnoses grows and grows. Some of the diagnoses are serious and we lose a lot of sleep over them while others are a little easier to handle.

As Casey grows her lungs are getting weaker. She needs oxygen most of the time, where even just 6 months ago she rarely ever needed it. Putting a nasal cannula on is easy, but what this signifies is very hard to accept. I know that her needing more oxygen means her lungs are getting worse. Her bones are very brittle and she breaks very easily. The bigger she gets the harder it is to move her and position her and she is at higher risk for more breaks. She has skin issues as well that increase as she grows. Her seizure activity and her GI issues are more complex each day.

We have been on borrowed time since Casey was born; this is something we are reminded of often. We have talked with her many specialists about what our future holds. We know her lungs will fail, we know her GI system will fail, we know her seizures will worsen, we know her body deformities will add to the internal systems failing and will eventually cause her pain.

For some people the end is quick. They may get sick and then in weeks or months it worsens and that’s the end. For some they may have a catastrophic event- a heart attack, a stroke, a big seizure. For others, like Casey, it’s a slow progression that started the day she was born. Some major illnesses speed up the progression, while some of her treatments may slow it down. We are very aware every single day that our daughter is dying. This takes a toll on a person.

On Casey’s good days we do everything we can to fill the day with things we know she enjoys. On bad days, we do our best to comfort her and to let her know she is loved. On bad days, especially when we seem to have many of them, we can’t help but wonder if our time is running out. In the back of our minds we are always preparing for the end. What will it look like, how can we be sure she is not hurting or scared, will we know when it’s time for us to let her go?

Iridescent-Chromatic-ButterflyBeing part of the special needs community has many rewards. I get to meet so many amazing people. One big down side however, is the loss. It never gets easier to watch someone lose their child. There are some children that remind me of my own, these losses are very hard and are very real reminders that at any day it could be my child.

My husband is my rock. He and I share our hopes and fears for our daughter. Some days are really hard. We kind of take turns pulling each other back up. I cannot imagine going through this without him. We have amazing friends and family that support Casey (and us). On bad days I may not return calls, or I may be a bit of a downer. Our support system never leaves our side or takes it personal if I disappear for a little while.

I have lost a few friends and we have grown apart from some family over the years. It hurts when relationships end, but the relationships that have remained and the new relationships that have grown are REAL. I know that the people in my life right now are in it for the long haul. I value the relationships I have in my life so much and I am so thankful for our amazing support system.

My priorities in life have changed a lot since Casey was born. I used to care about clothes, vacations, nice cars, and a lot of material things. I don’t care about any of that anymore. Now I care about the people in my life. Mostly, I care about Casey and making sure that she knows how much she is loved every single moment. The life I live now is not at all the life I pictured for myself. It is full life, and a happy life, just a very different life than I had planned.